Published: Sunday, April 20, 2014 at 04:27 PM.

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Walking is not just exercise for North Lenoir Spanish teacher Jennifer Spence, it’s a way to help combat a disease that took both her mother and grandmother from her.

In 2012, Spence’s mother passed away from Amyotrophic lateral sclerosis. ALS, often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.

Spence is captain of Team Brenda, which raises money for ALS research through fundraisers and a yearly walk in Greenville as part of the The ALS Association Jim “Catfish” Hunter Chapter. This year’s walk on April 12 raised more than $70,000 with Team Brenda contributing $2,387.

Spence said her mother was diagnosed in 2011 but began falling down (one of the symptoms of ALS) in 2009.

“We were terrified that it was ALS because that’s how my grandmother’s ALS started,” she said.

Spence said tests done in 2009 came back negative, but in July 2011 her mother was diagnosed and passed away a year later in August 2012. She said she knew what to expect after seeing her grandmother go through the process, but that didn’t make things any easier.

“I don’t know which is better,” she said. “I don’t know if knowing or not knowing is better.”

Walking is not just exercise for North Lenoir Spanish teacher Jennifer Spence, it’s a way to help combat a disease that took both her mother and grandmother from her.

In 2012, Spence’s mother passed away from Amyotrophic lateral sclerosis. ALS, often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.

Spence is captain of Team Brenda, which raises money for ALS research through fundraisers and a yearly walk in Greenville as part of the The ALS Association Jim “Catfish” Hunter Chapter. This year’s walk on April 12 raised more than $70,000 with Team Brenda contributing $2,387.

Spence said her mother was diagnosed in 2011 but began falling down (one of the symptoms of ALS) in 2009.

“We were terrified that it was ALS because that’s how my grandmother’s ALS started,” she said.

Spence said tests done in 2009 came back negative, but in July 2011 her mother was diagnosed and passed away a year later in August 2012. She said she knew what to expect after seeing her grandmother go through the process, but that didn’t make things any easier.

“I don’t know which is better,” she said. “I don’t know if knowing or not knowing is better.”

Spence said she wants to raise awareness about the disease.

“I want to let people know that ALS is affecting people in this area,” she said. “I don’t want to be affected by it, I want money to go to research so that treatments can be funded.”

Spence said she saw first hand the benefits donations had during her mother’s illness.

“The money that you give directly impacts someone with ALS,” she said. “The ALS Association has a borrow closet and they were able to give my mother a wheelchair and the things that she needed for her disease. They get you in touch with people about breathing machines.”

Spence said people can also apply for a quarterly grant and she was able to get one of the grants for her mother.

“We bought mama an iPad because during the last six to seven months of her life she lost the ability to speak completely, so she could only communicate with us on the iPad,” she said. “You are not giving your money to something that is just going to go in a corporate fund. The money given to the Down East fund will go directly to people in the Down East area. It’s helping the people with ALS in this area.”

Spence said she hopes more research can be done in the area of genetics.

“Both my mother and grandmother were tested for the gene and it wasn’t found, but there are so many different genes and they can only test for a certain amount of genes,” she said. “I want them to be able to have the funds and means to test for the genes and just to have hope so people don’t need to live with that anymore.”

Spence said she will continue her efforts to raise money.

“We will try to do different things every year to raise money and do our part to help people with ALS in the area,” she said. “I would like to increase the amount we raise each year and my goal for next year is $3,000.”

Even though ALS has been a trend in her family history Spense said she is not going to let it affect her life.

“I don’t want to live my life with that fear,” she said. “I want to know that everything is being done in the labs. I want to know that Congress is doing everything they can to support funding for research so that people like me don’t have to worry every time they trip or every time they swallow wrong or every time they stutter. Because every time that happens to me I think what if this and what if that. I don’t want to live my life like that.”

Noah Clark can be reached at 252-559-1073 or Noah.Clark@Kinston.com. Follow him on Twitter @nclark763.